Adaptation and Preliminary Validation of the Advance Care Planning Engagement Survey for Surrogate Decision Makers

Lauren J Van Scoy; Andrew G Day; Michelle Howard; Rebecca Sudore; Daren K Heyland

doi:10.1016/j.jpainsymman.2019.01.008

Adaptation and Preliminary Validation of the Advance Care Planning Engagement Survey for Surrogate Decision Makers

J Pain Symptom Manage. 2019 May;57(5):980-988.e9. doi: 10.1016/j.jpainsymman.2019.01.008. Epub 2019 Jan 24.

Authors

Lauren J Van Scoy¹, Andrew G Day², Michelle Howard³, Rebecca Sudore⁴, Daren K Heyland⁵

Affiliations

¹ Medicine, Humanities and Public Health Sciences, Pennsylvania State University College of Medicine, Hershey, Pennsylvania, USA. Electronic address: lvanscoy@pennstatehealth.psu.edu.
² Kingston General Health Research Institute and Clinical Evaluation Unit, Kingston, Ontario, Canada.
³ Department of Family Medicine, McMaster University, Hamilton, Canada.
⁴ Division of Geriatrics, University of California San Francisco, San Francisco, California, USA.
⁵ Department of Critical Care Medicine, Clinical Evaluation Research Unit, Kingston General Health Research Institute, Queen's University, Kingston, Ontario, Canada.

Abstract

Context: Although measures that assess patient engagement in the advance care planning (ACP) process exist, there are no validated tools to assess surrogate decision makers' (SDMs') role in ACP.

Objectives: The objective of this study was to adapt and begin to validate a patient-oriented questionnaire for use with SDMs of patients with chronic illness.

Methods: Questions from the 55-item patient-oriented ACP engagement survey were adapted for SDMs and assessed for face validity. The resultant 47-item questionnaire was administered to 65 SDMs of patients with chronic illness. Responses were assessed and items were flagged for removal based on item redundancy, nonresponses, and ceiling effects. A preliminary exploratory factor analysis was performed, internal consistency was assessed, and domains were constructed based on findings.

Results: The 47-item questionnaire was administered to 65 participants (mean age 51.8; 81% female; 96% Caucasian). Seventeen items were removed owing to redundancy (r > 0.80), and 13 items lacking face validity were removed. In a preliminary exploratory factor analysis of the resultant 17-item questionnaire, a three-factor solution was deemed most statistically and conceptually sound. Items were organized into domains: 1) serving as an SDM (seven items); 2) contemplation (four items); 3) readiness (six items). Internal consistency for each domain was high (Cronbach alpha 0.90-0.91).

Conclusion: The 17-item ACP engagement survey for SDMs (ACP-17-SDM) is a conceptually sound and reliable questionnaire adaptation of the original ACP engagement survey. This questionnaire may be used by researchers in parallel with the patient-oriented ACP engagement survey to more fully understand the impact of ACP interventions on SDMs. Larger studies are needed to more closely examine construct validity.

Keywords: Advance care planning; caregivers; decision making; psychometrics; surveys and questionnaires; terminal care.

Publication types

Validation Study

MeSH terms

Advance Care Planning*
Caregivers*
Chronic Disease
Decision Making
Factor Analysis, Statistical
Female
Humans
Male
Middle Aged
Patient Participation*
Preliminary Data
Prospective Studies
Proxy
Psychometrics
Surveys and Questionnaires*

Grants and funding

K24 AG054415/AG/NIA NIH HHS/United States